Let ‘s Talk Death – who are we and why are we here ?

In this collective blog, some of the organising team of Let’s Talk Death share their reflections on why they chose to get involved in planning events for Dying Matters Awareness Week.  We welcome comments and thoughts – on the blog or via Twitter @letstalkdeath
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Laura Middleton-Green, Lecturer
I’d originally planned to be a midwife. A placement in oncology on my nursing training changed all that, and I have been working in palliative and end-of-life care ever since I qualified as a nurse. I’ve always been interested in how different people are in relation to their attitudes towards mortality, how beliefs, faith, fear, attachment and love all influence how we face our final journey. And as a Vipassana meditator, I firmly believe that thinking about death can enrich our appreciation of being alive in the present moment.
It was around the time that my close friend Josh died in a bicycle accident that I became involved in Death Cafe, finding myself with nowhere to “be” with the thoughts and feelings of grief. A small event found people gathering with all sorts of different stories, instantly connected through their shared experience of mortality and loss.  I recall a close friend telling me that when her mother died she suddenly felt as though she were adrift on an ocean in a boat with no oars, yet suddenly realised that there were millions of others who were also adrift on the same ocean – she hadn’t noticed them so clearly before her own experience of loss.
I have attended or organised numerous Death Cafe-type events – in Berkhamstead, Hebden Bridge, Huddersfield and Bradford.  Something magic seems to happen in those spaces – it appears to me that death is not necessarily taboo, it is just that there is no natural space in which it can be talked about – we live in a world where all efforts seem to be going into developing the technological wisdom that allows us to live for longer and longer, we insure ourselves against every eventuality as though we can somehow fend off the inevitable. In this world, death has no dominion. Yet it does – as anyone who has been affected by bereavement will know.
After a series of lectures on palliative and end-of-life care a group of enthusiastic students began toying with ideas about what we could try at the University. Thus, “Let’s Talk Death” was born. Our first series of events in 2015 included a week-long Death Cafe in the Richmond Building, University of Bradford, and a half-day free conference. After this we agreed to continue plans for the following year, and this was made much easier by the generous donations of those who attended the events. We are now actively planning events for May 16th-19th 2016 and are keen for people to get involved – you don’t need to have any particular work-related interest in the area, and staff and students alike are most welcome to get involved. There are a range of levels at which you can participate – from baking cakes for the Death Cafe to designing our new logo, coordinating visitors to the University at the conference on 16th May, or writing a blog about your own personal experiences of loss that might help others who read it. The group are inclusive, respectful and creative. This year we are delighted that participation has extended beyond the University, with Nick Baggio (Marie Curie Chaplain) and Roz Roberts (Hospice Volunteer and Zen Buddhist) joining the group.  We are also working closely with local community organisations Pushing Up the Daisies and Calderdale Dying Matters Partnership.
If you are interested in getting involved, do get in touch: L.Middleton-Green@Bradford.ac.uk
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Ghost bike – Josh Phillips, Deansgate, Manchester

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Becky Barton – 3rd year children’ nurse
Death, the elephant in the room. We all know that one day it will happen, lets face it, none of us get out alive. But we choose to let the topic get swept under the carpet. Its not exactly seen an ideal conversation to have over your Sunday Lunch… “please can you pass the gravy? Oh and can I also have this lovely mahogany coffin when the time comes?”
Or is it?
My interest in issues surrounding death and dying were first brought to light when my family were given the news that my newborn cousin would probably not see her Late Teens. Complications at birth left her with a Hypoxic Brain Injury and her life expectancy was not good. The overwhelming emotion of the situation engulfed our family. Time went by and slowly we started to heal. But only because we all became comfortable talking about the fact Lucy was going to die a lot sooner than first anticipated…
I decided to get involved in the Death Cafe with the naive view that I could just help others talk about their worries. What I got out of the events was so much more than that. I saw people in varying stages of grief, had the honour of having people share their personal experiences of death, discussed concerns people had and helped people to feel more able to talk about this overwhelming topic… But I also gained so much. I left these events feeling invigorated, refreshed and inspired. I now feel more able, on both a personal and professional level, to be able to tackle death and dying head on. I feel I have a better understanding of grief and common concerns. I think everyone should experience this type of event…. Because it has been one of the most valuable learning experiences I have ever had…
(Plus there is cake!)
Unknown
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Fallon Scaife, 3rd year student nurse

At the age of 18 I started my first care job in a residential home for the over 65’s. I must admit that I did not know what I was getting myself into or have the first idea of what lay waiting for me beyond those doors. As I got to grips with the job and learnt more about caring for people I started to realise that I really enjoyed the work that I was doing. After a few weeks I came on shift one night to be told that a resident who everyone really liked was dying and I suddenly realised that this was one part of the job that I had not even thought about before now. Once all the other residents were settled for the night I went to sit with the gentleman who was dying and held his hand. Even though he did not respond to me in any way I felt that he was aware of my presence and had become more peaceful because of it. I spoke to him and reassured him that I was there for him. Throughout my shift I sat with the gentleman as much as I could in between my care rounds and talked to him. When he passed away in the early hours of the morning I felt that his death had been a peaceful one. Since this experience I have been with many people during their last hours of life and this is what brought me to nursing. I like to be able to help people at the end of their lives and make their last hours as comfortable as possible.

When I heard about the death café at University I felt that I wanted to be involved with this and I found it a fantastic and challenging experience. I found myself able to offer comfort to people that had experienced a recent bereavement as I had experienced this myself in recent months but I found it a challenge when I was approached by someone with a life limiting condition. Hearing the individual speak so openly about death and what they wanted to happen after their death was difficult but it made me realise that this is why we were holding this event. Not everyone is prepared to talk about death and dying whether it is their own or someone elses. This event was to erase the stigma surrounding death in the UK and speaking to this individual gave me hope that this was a sign of things to come. I know it gave me the courage to speak about my wishes and to start putting things in place for when the time comes. I have also been able to speak about and deal with my recent personal experience because even though I have been with so many people when they have passed away it was a totally different experience for me when someone I was close to passed away.

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Kim Selby – Second year student nurse

My name is Kim, I am a second year Adult Nurse student and I live with a chronic illness. Five years ago following years of chronic stomach pains and several episodes of acute pancreatitis. I decided to have a procedure called an ERCP which looks at the bile ducts and pancreas. This procedure should have meant that I was in and out of the hospital within the day. Shortly after the procedure it became apparent that things hadn’t gone to plan and I was suffering with acute pancreatitis and my organs had started to fail. I am still unable to remember the days that followed, my family received the phone call to say that they should make the journey to the hospital and prepare for the worst. My husband and I had not had any discussions around what if or what we wanted if the worst ever happened to either of us. Laying in the hospital bed and wishing that the pain would go away and wanting the toil of the interventions to stop. Laying their and wishing my life away I suddenly became aware of the importance of those conversations. I can now say that we have had the conversation. Although it isn’t set in stone as our opinions and wishes change, we both know what each other does and does not want. I have always encouraged my children to discuss any questions they have about death, they have experienced death of their pets, friends and family members. My answers have always been honest and I feel that this has helped them to be accepting about the topic.

So my reasons for partaking in the group began with my own experience of laying on my death bed and not been prepared. Since then I have lost several people close to me, some of which we were able to plan for and these deaths I have been able to come to terms with more easily. Working on ICU allowed me to become involved in a bereavement group. The group met regularly with family and friends of those people who had died on the unit. Discussing their lives and deaths seemed to help them come to terms with their loss. Seeing how the meetings helped these people gave me the understanding of how helpful preparing for death is. On my second placement I was fortunate to hold a ladies hand whilst she passed away, unfortunately her family did not arrive in time. I felt privileged to be there and to offer comfort to the lady and her family. Her family were very upset that she had died before they arrived but at the same time they thanked me for been there.

I do believe that people should be able to die with dignity and someone there with them. I understand that this is not always possible but feel that by talking more about death, it will become more acceptable and less taboo. People prepare for the birth of a baby why shouldn’t we prepare for the death of someone? Although last year I was only able to write a blog and linger in the background, I am hoping to be more involved this year.

Rainbow rose

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Roz Roberts, Hospice Volunteer

Death – the elephant in the room?  How do you eat an elephant? In bite sized chunks. Often we only recognise the elephant when we are forced by circumstances to confront what it means to us.

If we can approach death, & dying gently & over time, & with others, we can unwrap it into its parts; (fear, grief, compassion, love, separation & loss), & we can see that death is a part of life – the ever present cycle of change. May be then the elephant is not death, but our fears; of change & loss, our wanting things to stay the same, our concerns about & for loved ones, & the difficult prospect of pain, loss of dignity, losing our abilities as we age or progress through illness or disease.

This year my younger sister died, followed shortly by my frail elderly mother. Both events were anticipated – just the timing was uncertain. It has been both enriching & draining, emotionally & physically; a time of deep human connection, of being supported, a sharing of a universal human experience.

And it convinced me that approaching & befriending death, ageing, & change, as a part of everyday life – before events force us to – enriches life & how we live it, how we share it, & how we relate to others. Sometimes the hardest part is finding the opportunity, the space, & the courage to start this exploring & sharing. And doing it in bite sized chunks.

A death cafe is a great place to start.

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Kate Palmer, 3rd year student mental health nurse

I know and understand that death is part of life. It’s been part of my life since my Dad died when I was 14. Through coming to terms with and accepting personal loss, I feel I have something I may offer to others.

I know there isn’t a script I can follow when talking with someone about death and dying. But I can listen, try to understand and be with the person. I can be human, real and myself.

As a Mental Health Nursing student, I consider it a privilege to help people through difficult times. It’s in the small acts of kindness we can connect; a smile, a cuppa, a nod, a little well timed humour…

I became involved with The Death Café to contribute to the conversation about death. And life. With anybody who wanted to talk. To remove the stigma. To dispel the myth that it’s morbid to talk about death’s inevitability. I liked the idea of sitting with a coffee, eating cake and talking about the real, messy stuff of feelings.

The conversations were so different; filled with memories of characters and stories. Yet, the feeling I remember from the Death Café was a sense of relief. People want to talk about death and dying. Even though it can be hard to start, once the conversation flows, it helps. And if it helps, maybe it can heal too.

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